Making a Choice I Could Live With

“I could be found guilty of malpractice if I recommend that you forgo radiation and chemotherapy. Why would you commit malpractice on yourself?”

That was the response of one of New York’s leading breast cancer oncologists to my questioning whether the follow-up treatment he was recommending, which was the standard of care, was truly my best option given the particulars of my situation.

I was 54 years old at the time, recently diagnosed with breast cancer and had just had a lumpectomy. I now had three critical follow-up treatments to consider: hormone therapy, radiation treatment and chemotherapy. I needed to make those decisions quickly because there was a small window of time to start some of these treatments if that’s what I decided to do. Many people in my situation are most comfortable asking for and following their doctor’s recommendations and that’s certainly the right path for them. But that’s not how I wanted to proceed.

What follows is the story of why and how I investigated the recommended standard of care. I offer it as inspiration and encouragement for those who feel up to — and take comfort in — making their own medical decisions.

As a professional researcher, used to living in a world of probabilities and statistics, I set myself the task of evaluating the data that supported the standard of care the doctors were recommending. That way, I could weigh the pros and cons for myself, factor in my own preferences and values, come to my decisions about follow-up care and be responsible for whatever outcome befell me. But I had no idea how difficult that would prove to be. Not only was that data generally unavailable to the public, I had to summon the emotional courage to fight with and stand up to the doctors I consulted — some of the nation’s top practitioners — at a time when I was already stressed by my recent diagnosis and the awareness that my decisions could irrevocably impact the rest of the my life.

Whatever decisions I made had to take into account that my tumor was about 2 cm and estrogen-receptive, the surgical margins were good, the cancer had spread to the sentinel node but not to others, and the Oncotype DX score (a test that measures the risk of breast cancer becoming metastatic) was 9 (which meant the risk of my cancer metastasizing was relatively low). There is a lot of breast cancer in my family and so I was tested for BRCA1 and BRCA2 and was negative.

Hormone therapy seemed to be a no-brainer. The research I read showed that it dramatically reduced the odds of metastatic cancer with very few side effects, if I could tolerate it. Put a check in that box.

Radiation treatment seemed less appealing. On the positive side, it dramatically reduced the risk of recurrence of that cancer in that breast. However, the worst that would happen in the event of recurrence was undergoing surgery again and, in my mind, surgery truly wasn’t such a big deal. The downside of radiation, on the other hand, seemed pretty bad: the chance of lymphedema (painful fluid retention and tissue swelling, which I had already experienced from the surgery and managed to get rid of, but certainly did not want to go through again), the probability of being unable to repeat radiation if a different cancer showed up in that breast (which would then most likely require a mastectomy), and the probability of being rendered medically ineligible for post-mastectomy reconstructive surgery because of the effects of the prior radiation on the skin. When I compared those possible outcomes to the probability of another surgery in the event of recurrence, I preferred risking more surgery, especially since I was going to be followed very closely and it was likely that any new cancer would be caught early on. The standard of care recommended radiation because of its success in reducing recurrence; as the patient, I felt that it was up to me to weigh that against the possible downsides. No check in that box.

Chemotherapy seemed even less appealing but it took a lot more work to figure that out. Neither of the oncologists I had seen was willing or able to provide me with the data that showed how the odds of my getting metastatic cancer were affected if I underwent chemotherapy.

The first oncologist literally became red in the face with anger at what he considered my insolence in even asking for the data. When pressed, though, he provided frightening data about the consequences of forgoing chemotherapy that I quickly, and easily, discovered to be grossly inaccurate through my own research and consultation with my breast surgeon. That oncologist was also particularly infuriated at the Oncotype DX score having been ordered in my case. He considered my test a waste of time, money and resources because he believed that Oncotype DX scores were invalid if the cancer had already spread to the sentinel node, as mine had, in spite of the research that was being conducted at that very time testing that hypothesis. He was convinced the research would prove the score invalid and therefore dismissed it.

The second oncologist was the one who likened my inquiry to my committing malpractice upon myself. In his view, standard of care trumped any other consideration.

I finally accessed the relevant research by reading back issues of the New England Journal of Medicine, which I could competently do because of my background in research and statistics. Also my breast surgeon shared with me the outcome data of patients in his own practice, which he had collected over decades. Here’s what I learned. Chemotherapy would probably lower my risk of metastatic cancer 2 to 3 percentage points, a reduction deemed significant enough to become the standard of care. But that was simply not a big enough difference to make a difference to me.

That is the crux of the issue. If, hypothetically, my starting risk were 3 percent and chemo reduced that risk to 0 that would have been significant to me — it would mean my chance of metastatic cancer was practically eliminated. But that wasn’t what the statistics were saying. Instead, in my case, chemo would have simply shaved some points off a number that was likely to be below 15 percent to begin with. The downside of chemo, though, seemed huge to me: anemia, weakening heart muscles, possible irreversible changes in my body (chemo can permanently alter one’s sensory and bodily references), hair loss, weight loss, depression and the potential of chemo brain (also known as post-chemotherapy cognitive impairment — pleasant sounding, huh?) and even death. I was not willing to risk those side effects for the slight percentage point reduction.

The final test of my decision was my asking myself whether I would regret not having had chemo if my cancer metastasized. My answer was “no,” because I would never know whether it would have metastasized anyway and I wouldn’t have had to suffer from the effects of chemo. There would be no check in that box.

My battle was not over, though, simply because I had reached conclusions about what I wanted to do and was willing to be completely responsible for those choices. Now I had to find an oncologist who was willing to treat me despite my opting out of the standard of care. My logic didn’t matter to the first two oncologists I saw. It was enough for them that radiation and chemo were proved empirically to reduce the odds of local recurrence and metastatic cancer. They were hesitant, at best, and hostile, at worst, to treat me if I chose not to follow their recommendations.

The third oncologist I consulted, a woman in her seventies, began by recommending the standard of care but wanted to know my perspective and was willing to treat me regardless of my choice. We agreed about hormone therapy. On the topic of radiation, she wanted to be sure that I had considered all possible effects of radiation on metastatic cancer in my decision-making. Once she was convinced that I had, she was fine with my forgoing radiation as well. She considered my desire to forgo chemotherapy more of a gray area. Ironically, the issue was gray to her because, unlike the first oncologist, she thought the research testing the validity of Oncotype DX scores in cases where cancer had spread to the sentinel node could find that the scores did remain relevant, but those results weren’t in yet. She wanted to bring my case to one of the weekly meetings of her hospital’s entire breast cancer practice to fully discuss and debate follow-up treatment recommendations. They supported my decision to forgo chemo.

It’s now been six years and I remain cancer-free.

I’m not saying that my decisions are the right ones for everyone in my situation, nor am I advocating against the standard of care. I know women who have fought to do everything they can do to reduce their odds of metastatic cancer even a little bit, and that is certainly the right decision for them. I can also understand women who take greater comfort in trusting their doctors than questioning them and that comfort is likely critical to their personal recovery process.

What I am saying, though, is that I cared deeply about making my decisions about my life in a way that I could trust and not simply rely on doctors’ recommendations. The emotional and mental effort to understand, let alone challenge, the standard of care was enormous. But if I hadn’t done it, I would never have found out that there were some other, better-for-me, decisions I could make that were different than what the leading authorities were recommending.

“I could be found guilty of malpractice if I recommend that you forgo radiation and chemotherapy. Why would you commit malpractice on yourself?”

That was the response of one of New York’s leading breast cancer oncologists to my questioning whether the follow-up treatment he was recommending, which was the standard of care, was truly my best option given the particulars of my situation.

I was 54 years old at the time, recently diagnosed with breast cancer and had just had a lumpectomy. I now had three critical follow-up treatments to consider: hormone therapy, radiation treatment and chemotherapy. I needed to make those decisions quickly because there was a small window of time to start some of these treatments if that’s what I decided to do. Many people in my situation are most comfortable asking for and following their doctor’s recommendations and that’s certainly the right path for them. But that’s not how I wanted to proceed.

What follows is the story of why and how I investigated the recommended standard of care. I offer it as inspiration and encouragement for those who feel up to — and take comfort in — making their own medical decisions.

As a professional researcher, used to living in a world of probabilities and statistics, I set myself the task of evaluating the data that supported the standard of care the doctors were recommending. That way, I could weigh the pros and cons for myself, factor in my own preferences and values, come to my decisions about follow-up care and be responsible for whatever outcome befell me. But I had no idea how difficult that would prove to be. Not only was that data generally unavailable to the public, I had to summon the emotional courage to fight with and stand up to the doctors I consulted — some of the nation’s top practitioners — at a time when I was already stressed by my recent diagnosis and the awareness that my decisions could irrevocably impact the rest of the my life.

Whatever decisions I made had to take into account that my tumor was about 2 cm and estrogen-receptive, the surgical margins were good, the cancer had spread to the sentinel node but not to others, and the Oncotype DX score (a test that measures the risk of breast cancer becoming metastatic) was 9 (which meant the risk of my cancer metastasizing was relatively low). There is a lot of breast cancer in my family and so I was tested for BRCA1 and BRCA2 and was negative.

Hormone therapy seemed to be a no-brainer. The research I read showed that it dramatically reduced the odds of metastatic cancer with very few side effects, if I could tolerate it. Put a check in that box.

Radiation treatment seemed less appealing. On the positive side, it dramatically reduced the risk of recurrence of that cancer in that breast. However, the worst that would happen in the event of recurrence was undergoing surgery again and, in my mind, surgery truly wasn’t such a big deal. The downside of radiation, on the other hand, seemed pretty bad: the chance of lymphedema (painful fluid retention and tissue swelling, which I had already experienced from the surgery and managed to get rid of, but certainly did not want to go through again), the probability of being unable to repeat radiation if a different cancer showed up in that breast (which would then most likely require a mastectomy), and the probability of being rendered medically ineligible for post-mastectomy reconstructive surgery because of the effects of the prior radiation on the skin. When I compared those possible outcomes to the probability of another surgery in the event of recurrence, I preferred risking more surgery, especially since I was going to be followed very closely and it was likely that any new cancer would be caught early on. The standard of care recommended radiation because of its success in reducing recurrence; as the patient, I felt that it was up to me to weigh that against the possible downsides. No check in that box.

Chemotherapy seemed even less appealing but it took a lot more work to figure that out. Neither of the oncologists I had seen was willing or able to provide me with the data that showed how the odds of my getting metastatic cancer were affected if I underwent chemotherapy.

The first oncologist literally became red in the face with anger at what he considered my insolence in even asking for the data. When pressed, though, he provided frightening data about the consequences of forgoing chemotherapy that I quickly, and easily, discovered to be grossly inaccurate through my own research and consultation with my breast surgeon. That oncologist was also particularly infuriated at the Oncotype DX score having been ordered in my case. He considered my test a waste of time, money and resources because he believed that Oncotype DX scores were invalid if the cancer had already spread to the sentinel node, as mine had, in spite of the research that was being conducted at that very time testing that hypothesis. He was convinced the research would prove the score invalid and therefore dismissed it.

The second oncologist was the one who likened my inquiry to my committing malpractice upon myself. In his view, standard of care trumped any other consideration.

I finally accessed the relevant research by reading back issues of the New England Journal of Medicine, which I could competently do because of my background in research and statistics. Also my breast surgeon shared with me the outcome data of patients in his own practice, which he had collected over decades. Here’s what I learned. Chemotherapy would probably lower my risk of metastatic cancer 2 to 3 percentage points, a reduction deemed significant enough to become the standard of care. But that was simply not a big enough difference to make a difference to me.

That is the crux of the issue. If, hypothetically, my starting risk were 3 percent and chemo reduced that risk to 0 that would have been significant to me — it would mean my chance of metastatic cancer was practically eliminated. But that wasn’t what the statistics were saying. Instead, in my case, chemo would have simply shaved some points off a number that was likely to be below 15 percent to begin with. The downside of chemo, though, seemed huge to me: anemia, weakening heart muscles, possible irreversible changes in my body (chemo can permanently alter one’s sensory and bodily references), hair loss, weight loss, depression and the potential of chemo brain (also known as post-chemotherapy cognitive impairment — pleasant sounding, huh?) and even death. I was not willing to risk those side effects for the slight percentage point reduction.

The final test of my decision was my asking myself whether I would regret not having had chemo if my cancer metastasized. My answer was “no,” because I would never know whether it would have metastasized anyway and I wouldn’t have had to suffer from the effects of chemo. There would be no check in that box.

My battle was not over, though, simply because I had reached conclusions about what I wanted to do and was willing to be completely responsible for those choices. Now I had to find an oncologist who was willing to treat me despite my opting out of the standard of care. My logic didn’t matter to the first two oncologists I saw. It was enough for them that radiation and chemo were proved empirically to reduce the odds of local recurrence and metastatic cancer. They were hesitant, at best, and hostile, at worst, to treat me if I chose not to follow their recommendations.

The third oncologist I consulted, a woman in her seventies, began by recommending the standard of care but wanted to know my perspective and was willing to treat me regardless of my choice. We agreed about hormone therapy. On the topic of radiation, she wanted to be sure that I had considered all possible effects of radiation on metastatic cancer in my decision-making. Once she was convinced that I had, she was fine with my forgoing radiation as well. She considered my desire to forgo chemotherapy more of a gray area. Ironically, the issue was gray to her because, unlike the first oncologist, she thought the research testing the validity of Oncotype DX scores in cases where cancer had spread to the sentinel node could find that the scores did remain relevant, but those results weren’t in yet. She wanted to bring my case to one of the weekly meetings of her hospital’s entire breast cancer practice to fully discuss and debate follow-up treatment recommendations. They supported my decision to forgo chemo.

It’s now been six years and I remain cancer-free.

I’m not saying that my decisions are the right ones for everyone in my situation, nor am I advocating against the standard of care. I know women who have fought to do everything they can do to reduce their odds of metastatic cancer even a little bit, and that is certainly the right decision for them. I can also understand women who take greater comfort in trusting their doctors than questioning them and that comfort is likely critical to their personal recovery process.

What I am saying, though, is that I cared deeply about making my decisions about my life in a way that I could trust and not simply rely on doctors’ recommendations. The emotional and mental effort to understand, let alone challenge, the standard of care was enormous. But if I hadn’t done it, I would never have found out that there were some other, better-for-me, decisions I could make that were different than what the leading authorities were recommending.

this is excellent. no matter what choice you make, feeling in charge of those choices allows you to know how strong you are. the cancer industry wants you to buy everything. it's like being at an appliance store where they pressure you to get the extended warranty. you are in charge of your treatment. many of your doctors will not even know what side effects there are with your suggested treatment. side effects that can impact your quality of life as they think keeping you alive at any risk is the only point. fight for your life with your wits not with the dollars signs of the cancer industry.
my example is that no one ever discussed chemo brain with me. I worked in the investment industry. I could not understand why I could not cope when I went back to work. my oncologist could not, would not discuss my dis function and frustration. talk to the psychologist was all she would recommend. the psychologist suggested post it notes to help me keep track of information I needed to do my job.
bottom line is I lost my job, my insurance and my retirement program because of not understanding chemo brain.
take charge of your life and your treatment!

So very, very sorry you ended up blindsided. I believe the doctor's job is to give us the information so that we can make the right decision for ourselves. Problems arise when doctors don't have or refuse to provide the complete information about benefits and side effects. By arguing for standard of care, doctors are relying only on the scientifically verified benefits, without allowing the patient to balance the tradeoffs for themselves.

I'm so sorry for my delay in responding to your question - I just now saw your posting. I've mostly been doing fine, with no recurrence. I have developed some trigger fingers, though, that began when I started on the estrogen blockers and were getting worse recently. So my oncologist has switched me to tamoxifen since I only have three more years left on the ten-year regimen. The pain in my fingers has gradually abated although the triggers remain. Not bad, all things considered. Hope you're doing well, too!

Hi, Merle. I am in the same situation as you were with regards to treatment options. My diagnosis is very similar and after researching, I came to the same conclusion as you did regarding chemo. I agree that it is time consuming and difficult to find any real numbers regarding current treatments. When I finally began uncovering the facts about treatment efficiacy, I became more resolute in my decision. However, I also feel that Tamoxifen is not truly necessary for me. I was considering radiation and foregoing chemo and Tamoxifen. I was just wondering if you would please provide and update as to your health. Have you remained cancer free? Also, what research did you find regarding radiation? It is all so much to consider, and having resources readily available would be a tremendous help.